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Nonprofit Overview

Causes: Digestive Diseases & Disorders, Health, Lung Diseases

Mission: As an organization operated entirely by adults with CF who volunteer their time, our mission is to provide a source of information and education for adults with CF regarding the basis, nature and progression of CF, the latest treatments and research, and to assist in the psychosocial aspects of coping on a day-to-day basis. This is accomplished by publishing a free, quarterly newsletter called CF Roundtable, and through our website and social media sites.

Results: The US Adult Cystic Fibrosis Association now has over 3000 subscribers to the CF Roundtable newsletter, website and our social media platforms such as Twitter, CF Roundtable FB, CF Connect FB and LinkedIn. CF Roundtable newsletter is available in print (snail mail), by email (PDF) or online through our website when a person subscribes. Anyone can subscribe to learn more about CF and its effects on adults with CF and their families.

Target demographics: Adults with Cystic Fibrosis

Direct beneficiaries per year: Over 3000 subscribers and 13 college students with scholarships.

Geographic areas served: the United States with individuals and organizations within the CF Community

Programs: 1. CF Roundtable, our national quarterly newsletter available for free in print or online via our website, www.cfroundtable.com. 2. Website blog, resources, links to Facebook, Twitter and LinkedIn.

Community Stories

100 Stories from Volunteers, Donors & Supporters

Board Member

Rating: 5

CF Roundtable has been a life saving resource for me and many others. The newsletter started as a resource for adults with CF when there were no other adult focused organizations. I also think parents of children who have CF can also gain a lot by reading the articles in the CF Roundtable.

Now with the addition of a blog CF Roundtable provides up to date information on medical research and up to the minute information on efforts to protect the rights of people with CF.

The CF Roundtable community of readers are interested in learning more about CF and always ready to help others. The articles provide important information that helps people live healthier lives. Reading about others with CF makes me feel stronger and gives me hope for the future. Writers provide information that has resulted in me learning about new ways to deal with CF and the effects it has on my life. I am grateful for the CF Roundtable.

Previous Stories
2

Board Member

Rating: 5

This is an excellent publication. Anyone touched by cystic fibrosis should subscribe. Terrific and moving articles written by adults with cystic fibrosis.

Board Member

Rating: 5

I started reading CF Roundtable several years ago. I'm now proud to serve as a board member for the organization. The newsletter, blogs, and social media presence are such a great resource for all of us with cystic fibrosis.

Writer

Board Member

Rating: 5

CF Roundtable was the first source of information about living with CF as an adult that I found after being diagnosed 13 years ago. I had so much to learn. Having the resources of CF Roundtable together with my CF care team has made my introduction to CF a little easier and definitely richer.

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Volunteer

Rating: 5

CF Roundtable was one of the first resources I found for living with cystic fibrosis after my delayed diagnosis as an adult. This newsletter, the blogs and Facebook updates continue to support my education about this disease we share.

Board Member

Rating: 5

The great thing about the CF Roundtable is that it keeps evolving. The publication continues to provide very insightful and timely information by and for those with Cystic Fibrosis. Published quarterly, each issue has a focus topic theme in addition to regular columns like Ask the Attorney, Speeding Past 50 and Information from the Internet. Where the organization has grown has been in adapting to reach out further into the community. Originally mailed to subscribers only through the US Mail, the CF Roundtable is now available for download along with past issues and several blogs are published via email each week. It is a great way to stay connected. Finally, the organization which publishes the CF Roundtable now offers scholarships to students with CF proving their commitment to further strengthening the CF community.

Previous Stories

Board Member

Rating: 5

The CF Roundtable is a fantastic publication. As an adult with CF, I look forward to receiving my free quarterly issue by US mail and by email. It's rare to find a newsletter that connects on so many levels but the CF Roundtable consistently does just that. It addresses issues that I have dealt with or most likely need to plan on dealing with in the future. Every page provides insights and perspectives from a CF adult, family member or caregiver. It's inspirational, educational and sometimes funny. And the best part is that when I find it appropriate, I can share my story with the greater CF community, get published and feel like I'm really making a difference. The CF Roundtable has also been a valuable tool for my wife to learn about aspects of CF that she might not normally be exposed to. Thank you Roundtable for bringing the CF family together.

Jennifer641

Board Member

Rating: 5

I've been reading the CF Roundtable, published by USACFA, throughout my adulthood (I think I received my first newsletter in college, I've been in my professional career over fifteen years) -and always learned something from it. The content is a balance of practical work/life and up to date treatment information relevant to the cystic fibrosis community. The outreach over the years has only grown and expanded - through social media and other outlets to continue to offer content accessible, and free, to both subscribers and the public in whatever format they opt. With so much going on in the adult CF community, it is great to have the CF Roundtable put everything together in one place.

1

Board Member

Rating: 5

USACFA has made a difference in so many lives of those living with CF over the years. I began reading the newsletter about 15 years ago and I always learn something new. Besides informing their readers of clinical advancements and clinical trials, they also address the emotional impact of CF. So often this aspect of CF gets overlooked. Reading articles written by adults with CF who have walked the same path as you provides support that is so difficult to come by in a rare disease community, especially given the isolating effects of strict infection control policies. I'm so proud to be a part of this organization!

1

Volunteer

Rating: 5

As a volunteer for the US Adult CF Assn and an avid reader of their newsletter, Cf Roundtable, I feel they offer the CF community support, inspiration and an environment to share experiences. Living with cystic fibrosis can be isolating and lonely but being part of this organization helps me feel part of a big family who cares. I am happy to see them grow and gather more readers who then become writers.

1

Board Member

Rating: 5

USACFA (publisher of CF Roundtable) has always been a beacon of advocacy in the CF community. Their publication covers many avenues of living with CF, and always offers a well-organized, thought-provoking, and optimistic tone for the reader. So thankful for all that they do, and I'm honored to work with such a passionate group of people.

1

Board Member

Rating: 5

As an adult with cystic fibrosis, CF can be an isolating disease. CF patients are not allowed physical contact with each other and the CF Roundtable provides a critical outlet for patients where we can connect and share experiences and knowledge. The publication is diverse and addresses a wide variety of issues within the CF community, including social and financial challenges, seeking higher education, working, traveling and clinical innovations. There really is no comparable publication in the CF community!

1

Board Member

Rating: 5

I have been reading CF Roundtable for many years and am proud to now be a part of the organization. It is a great resource for those with CF to learn about studies and exciting news in the CF world. But it is also a great way to connect with other CF adults and their stories, via the quarterly newsletter and online on the CFR blog. I highly recommend this organization for anyone with CF.